November is Lung Cancer Awareness Month, however, disappointingly few Americans are aware of many important truths about lung cancer. Lung cancer is the #1 cause of cancer related deaths in the US, and it is estimated that 160,000 people will die of lung cancer in 2014. Most of us are aware of the relationship between lung cancer and tobacco use. However, new cases of lung cancer in people who have never smoked are on the rise. In 2007, approximately 10% of lung cancers were diagnosed in people who never smoked. That number has tripled to 30% of cases in 2014; roughly 66,000 Americans who have never smoked will be diagnosed with lung cancer this year. “Never smokers” who are diagnosed with lung cancer tend to be younger and their disease is more serious when they are diagnosed.

John’s perspective

For Lung Cancer Awareness Month, our patient Mr. John Leung was willing to share his experience as a never smoker who was recently diagnosed with lung cancer and treated by our lung surgery team at UC Davis, in the hopes of, as John puts it, “breaking the mindset that lung cancer only happens in people who smoke.”

John, only in his 50’s, experienced a cough for four years. The cough would get better and worse and at times improved after he took medicine for post-nasal drip. He had a chest x-ray when the cough began, and he had another this summer when the cough worsened. John remembers feeling “apprehensive and worried” when his doctor told him that there was a mass on his chest x-ray. “It wasn’t until my CT scan was abnormal, that I knew something had to be dealt with and I felt that it was highly likely to be cancer.” John said. He felt like it was probably cancer because he knew it had not been present on his original x-ray four years earlier. John was diagnosed and treated with a minimally invasive (VATS) lobectomy for stage-1 non-small cell lung cancer in September.

How did he handle the diagnosis?

When John was told that his lung mass might be cancer, he immediately started “looking for a reason for why this would happen to me and looking for someone to blame. I even tried to blame LA because I lived there in the smog.” John said. “I wondered if it happened because of something I had done.” He and his wife embarked on the journey of finding doctors and information that would help them. “I needed to have a doctor who could explain a process that I could understand and buy into.” He wanted to have something done quickly, but he needed to feel comfortable with the plan. So he sought several opinions.

Fear of the unknown has been a part of John’s lung cancer experience. Initially, he was worried about how bad the cancer was, whether it was local or if it had spread to other organs. Then he worried about surviving surgery. Now, he worries about whether it will recur soon, but he is learning to accept his fears just as he has accepted his diagnosis, knowing that he did nothing to cause it.

His family and friends have played an immense supporting role during the time of diagnosis, surgery and recovery. His wife encouraged him to write questions down the night before his doctor visits, so they knew what they wanted to know before the visit was over. Everyone in his family is supportive, including his mom and siblings.

How does he feel about having Lung Cancer?

Some patients with lung cancer feel ashamed or embarrassed to be diagnosed with lung cancer, but not John. If anyone asks him he is honest with them and tells them about his diagnosis. He sent his work colleagues an email every two weeks informing them of what was happening and how he was feeling. He is a member of a Rotary club and he stood up and told his story at a meeting. He hopes that by telling his story it will help people understand that anyone can develop lung cancer, not just people who have smoked.

In essence John has become an “ePatient”: educated, empowered and empathic. “I have noticed that there is a lack of lung cancer awareness.” John points out. “There seems to be pockets of people who are willing to drive the agenda because of personal experience, but there does not seem to be a general awareness of lung cancer like there is for other cancers. People think that lung cancer is a penalty for the vice of smoking, but there doesn’t seem to be awareness that lung cancer occurs in people who never smoked. The first question anyone asks me when I tell them I have lung cancer is – were you a smoker? And then they want to know why I have lung cancer.”

During the course of his diagnosis and treatment, John has learned that medicine and science have moved much further than he realized when it comes to lung cancer. He’s been “amazed at the progress.” He hopes that in the future, people won’t have preconceived notions about lung cancer and its treatment options. There are treatment options and hope for patients with lung cancer. “I didn’t think I would have it so easy if I had lung cancer.” Of course, nothing is easy. But it doesn’t have to be impossible either.

John has been very brave to share his experience to raise awareness about lung cancer in people who have never smoked. It is important to remember that chest pain, shortness of breath and cough are symptoms that should not be ignored. Unfortunately, most patients with lung cancer do not have symptoms until they have advanced disease. For patients with a long history of smoking, screening with a low-dose CT chest is currently recommended, please click here for more information. There are no screening recommendations for people who have never smoked at this time. Please remember that lung cancer can happen in anyone and treatment options are available.

The UC Davis Lung Cancer Chat Room is an interactive meeting of learning and support for patients, families, friends and caregivers affected by lung cancer.

This support group is proudly sponsored by the UC Davis Comprehensive Cancer Center.

The UC Davis Lung Cancer Chat Room provides a time for education, sharing and an opportunity to connect face-to-face with people who can relate the realities of lung cancer. Special guest speakers are invited to give presentations on topics of interest to patients. Educational and support materials are provided.

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This forum is for informational purposes only, and is not intended as a substitute for medical care, advice or professional services. Please contact your primary care physician or other local licensed health professional for specific input on your health-care needs. For a medical emergency, dial 911.

The views expressed on this blog are those of the author(s) and readers. This blog does not imply that UC Davis Health System endorses the views expressed.